Cerebral Palsy
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Prolapsed lumbar disc

Elaine58Elaine58 Member Posts: 5 Listener
edited February 2018 in Cerebral Palsy
Any tips on dealing with chronic pain due to a prolapsed lumber disc which is not suitable for surgery.

Replies

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @Elaine58, and welcome to the community! Sorry to hear you're living with pain. I've moved this post into our ask a chronic pain advisor category, where hopefully Claire will be able to help.
  • mikehughescqmikehughescq Member Posts: 6,573 Disability Gamechanger
    Same here. 

    1) I have two physio exercises which work if I do them twice a day or, alternatively, if I cross train for 10 minutes every day, which maintains my core strength. Aggressive private physio on a weekly basis for 8 weeks worked wonders too.

    2) I lost 3 stone, more by accident than design, but the impact on my spinal pain was obvious. I won't be putting it back on.

    3) I had a gait assessment and now wear orthotics. 

    As a consequence I have gone from high dose painkillers 24 hours a day to no painkilllers and mostly full mobility. 

    L3 to L5 are disintegrating and there's a small benign tumour down there which would inhibit surgery, albeit that I don't want surgery anyway. 

    Most people give up on physio "because it's painful"> Well yes it can be. I was given all sorts of nonsense. 8 different specific exercises. 6 made it worse. I found 2 that didn't make it worse and, although stiff and painful, they eventually started to make it better. If you're looking for a 1 week or 1 month fix then forget it. It takes weeks to months but it's so worth it. My pain was probably a 7/10 at its worst. It's mostly 0/10 at present. 
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Scope
    Senior online community officer
  • Elaine58Elaine58 Member Posts: 5 Listener
    Yes I am under a consultant at the pain clinic. I am on opioids,nerve pain medication. I had a Microdiscetomy previously at the same level. Surgery is not an option as L4 h moved 25 percent inward towards my spinal cord.
  • ClaireSaulClaireSaul Member Posts: 92 Pioneering
    Hi @Elaine58
    I am so sorry that you are struggling - having had cauda equina and various major back surgeries I have some idea!  I agree with Mike that one of the most effective ways to help yourself is by building physical strength - but as he also says it is probably the hardest as it is not a quick fix and to be honest it can be very painful (I would swear there if I was speaking to you!)
    The thing that I found the hardest was finding someone to help me without making it worse - I have tried physio, osteo & chiropractors over the years.
    But your pain clinic should have a specialist physio attached to them who can work with you to build up core strength, without causing the disc to herniate further. Pilates is good and gentle swimming (but not breast stroke) 
    Am I right in thinking that the disc that is causing your current problems is the same one that the microdiscectomy was performed on?  
    What nerve pain medication are you taking - gabapentin, pregabalin?  Amitryptilline can be useful.
    I hate to be the bearer of bad news, but opioids can make nerve pain worse - which I appreciate is not what anyone wants to hear and I was the same (I wrote about different opiates and chronic pain if you are interested?) - so it might be worth discussing this with your pain team too.
    Have you tried a TENS machine?  There is also a device that I have come across called an Oska Pulse, but it is expensive & is not available in the UK yet.  However, the company have been conducting trials in exchange for reviews so it might be worth be worth contacting them - there have been some very positive reviews.
    Finally, with this cold weather in mind, heat pads!
    Let me know how you get on,

    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • Elaine58Elaine58 Member Posts: 5 Listener
    Hi Claire
    Yes your right it's the same disc that has re herniated but worse as out on both sides now. I am on Gabapentin, Amitryptilline, Oxycontin. Tens machine gives no relief, have undergone a pain management course tried hydrotherapy (increased pain). I am a retired nurse so tend to just do as much as I can on my good days but not enough to cause a flare up.
  • ClaireSaulClaireSaul Member Posts: 92 Pioneering
    Hi @Elaine58
    Sorry I have been so long coming back to you again - bad week myself!  I am also an ex nurse - when I had my first spinal fusion, in a 6 bedded bay 4 of us were medics (3 nurses, 1 paramedic).  
    I must admit that I also found hydrotherapy increased the pain - if I could get in the bath, I wouldn't because that alsoincreases the pain.  
    I'm not going to teach mother to suck eggs here....I am sure you already know about the medications, and you are taking the "usual" mix.  I think that the oxycontin probably did aggravate my pain eventually, and the spinal fusions certainly didn't help me.
    Has anyone looked at your suitability for spinal cord stimulation?  It doesn't help everyone, but it has helped mask my nerve pain and I have now come off the oxycontin (240mg BD) completely.  I do still take pregabalin (300mg BD) regularly, and if I have a severe dislocation I will take some oxynorm, but with the scs I feel that I have some control back over my back & leg pain.
    Where did you attend your pain management course?  I wonder if they have a neuromodulation department.....

    Claire


    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • Elaine58Elaine58 Member Posts: 5 Listener
    Hi I know wot u mean by a bad week I have been the same. I had a cordial epidural injection in Dec but this is starting to wear off. I did my pain management course at James Cook University Hospital which is close to where I live. No one has mentioned SCS to me but next time I speak to the pain clinic staff I will be sure to ask them. Ty for your response.
  • ChelseagirlChelseagirl Member Posts: 14 Listener
    I also apart from chronic lumbar,  knee elbow, hand, neck, foot arthritis + menopause. I have prolapsed womb+bladder who would I ask for supporting letter for transfer to social housing with 2nd toilet, would it be GP as my housing assoc in Windsor said they not bothered about Mental Health depression either!!!!!
  • Elaine58Elaine58 Member Posts: 5 Listener
    If you have an Occupational therapist involved speak to them as here in Cleveland they will do a supporting letter for you. Good luck on getting a new home
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